Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can (...) meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance. (shrink)

A concept of diversity is an understanding of what makes a group diverse that may be applicable in a variety of contexts. We distinguish three diversity concepts, show that each can be found in discussions of diversity in science, and explain how they tend to be associated with distinct epistemic and ethical rationales. Yet philosophical literature on diversity among scientists has given little attention to distinct concepts of diversity. This is significant because the unappreciated existence of multiple diversity concepts can (...) generate unclarity about the meaning of “diversity,” lead to problematic inferences from empirical research, and obscure complex ethical-epistemic questions about how to define diversity in specific cases. We illustrate some ethical-epistemic implications of our proposal by reference to an example of deliberative mini-publics on human tissue biobanking. (shrink)

Salmon genomics is an emerging field that represents a convergence between socially important scientific innovation and a politically volatile topic of significant interest to the public. These factors provide a strong rationale for public input. This report describes such input from a public engagement event based on the principles of deliberative democracy. The event involved a random, demographically stratified sample of 25 British Columbians (Canada). While some participants opposed sequencing the salmon genome on principle, on the whole participants responded favourably, (...) citing the value of increased knowledge of human impacts on salmon, potentially slowing or reversing this impact, and assisting sustainable management of salmon resources. Participants discussed many of the potential implications of the sequencing project and formulated recommendations pertaining to regulations, international treaties, public education and engagement. Overall, the project illustrates that the specific design and implementation of this event is capable of producing sound policy advice from the general public on genomic-related issues. (shrink)

The ethical theories employed in health care today assume, in the main, a modern Western philosophical framework. Yet the diversity of cultural and religious assumptions regarding human nature, health and illness, life and death, and the status of the individual suggest that a cross-cultural study of health care ethics is needed. A Cross-Cultural Dialogue on Health Care Ethics provides this study. It shows that ethical questions can be resolved by examining the ethical principles present in each culture, critically assessing each (...) value, and identifying common values found within all traditions, It encourages the development of global awareness and sensitivity to and respect for the diversity of peoples and their values and will advance understanding as well as help to foster a greater balance and a fuller truth in consideration of the human condition and what makes for health and wholeness. (shrink)

The original version of this article unfortunately contained a mistake. The fourth author’s name is Bianca Crewe, not Bianca Crew. The original article has been corrected.